Has Anyone Had A Lumbar Puncture To Check Your Hypocretin Level? | MyNarcolepsyTeam

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Has Anyone Had A Lumbar Puncture To Check Your Hypocretin Level?
A MyNarcolepsyTeam Member asked a question πŸ’­

Has anyone had a lumbar puncture to measure your hypocretin levels? I am seriously considering asking my doctor if I can have this test done since I can't seem to sleep during MSLT studies. Since my last study didn't reveal anything, I cannot get medical treatment. My symptoms are textbook type 1 narcolepsy:

This might be more akin to idiopathic hypersomnolence, but I NEVER EVER feel awake. EVER. Nearly every morning is a struggle with sleep inertia. I could easily sleep 12 hours if I had the… read more

posted July 5, 2022
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A MyNarcolepsyTeam Member

I could never sleep long enough to even do a night study, so I had the lumbar puncture last year and found that I was Type 1. The puncture itself wasn't a big deal and I had no pain during the procedure or after. I did take it very easy for the next couple of days just to make sure I didn't get a headache.

posted July 20, 2022
A MyNarcolepsyTeam Member

MSLT and the overnight test I fell into REM within 2 min every session. So that was enough.

posted July 11, 2022
A MyNarcolepsyTeam Member

My doctor says that he doesn't bother with MSLTs anymore because sometimes it has taken up to a series of five before people demonstrate narcolepsy because sleeping in a strange place is not that conducive to the demonstration so he treats symptomatically (which is fantastic for me) since I show all the symptoms for narcolepsy and cataplexy.

posted October 9, 2023
A MyNarcolepsyTeam Member

Hey, I didn't have a lumbar puncture as my consultant decided that my symptoms were enough, alongside my overnight study & MSLT even though it didn't "scientifically" show narcolepsy (as I didn't go into REM sleep during the day). He chose not to do the lumbar puncture because my symptoms were so textbook and the presence of cataplexy makes a diagnosis easier.

Your symptoms do sound very textbook type 1 narcolepsy, so if your doctor won't diagnose you based just on your MSLT it may be worth asking for one. I've heard that they aren't too bad and most people are fine with them.

posted July 6, 2022

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